My experience of late-onset migraine
By: Elowen Rose, who lives with migraine
I’m 52 and have migraine with aura, but I haven’t always lived with migraine. I had three severe attacks when I was about 12. The first time I had one I lost my hearing and sight and was violently sick. Following these three attacks I didn’t have a single one for 40 years. Then, when I turned 50 in October 2020, they started again.
My migraine symptoms
Initially, I feel a strange and intense wave of panic and then my vision starts to go. I’ll be looking at my computer screen and be able to see everything but it feels like I can’t. I liken it to looking at a screen when the sun is shining on it. A couple of minutes later I will lose the centre of my vision and a bright fluorescent line will appear down the middle of my vision. Then I see a zigzag that starts small on the outside of my field of vision. It then gets bigger and pulsates and moves across my line of sight. This lasts for about 30 minutes and then I experience severe head pain and neck pain. I also feel very fatigued like I could just lie down on the pavement and go to sleep.
My neurologist has told me that the intense wave of panic I feel at the start of a migraine attack is actually part of the attack itself. Before I saw him my GP told me I was just being neurotic and overly anxious. The GP said I was having a panic attack and that was causing a migraine attack, but according to my neurologist it’s the other way around.
Developing migraine later in life
When I first had a migraine attack at 50, I thought I was having a stroke. I phoned the GP who said it sounded like migraine and he told me to come off my hormone replacement therapy (HRT) oestrogen tablets which I’d been taking for three months. I had two more attacks that same week.
I was then given oestrogen patches and was migraine-free for a couple of months. I had an attack every three months and every time the doctor tried to up my oestrogen it triggered more attacks. In January 2022 I had to take a week off work with a severe migraine attack. I went back to work the next Monday and then had another attack.
I was told by my GP to take some time off work. He thought my migraine attacks might be stress-related. I was getting pulsating pain on the right side of my head with muscle spasms in the right side of my neck. I remember I tried to take my dogs for a walk and just had to sit down in a field because the pain was so intense.
My healthcare journey
I was referred to a physio who thought I had broken a bone in my neck, although I was later told that I would only have broken that specific bone if I’d been in a car crash. I also had a brain scan and paid to see a consultant hormone specialist. I had to wait two months for my brain scan and when it came back there were some signs of intercranial hypertension (a build-up of pressure in the head) so I was given a referral to a neurologist.
The wait time to see the NHS neurologist was 43 weeks so I paid £180 to see a neurologist at a private hospital. He said he didn’t think I had intercranial hypertension and said I needed a neck MRI. I had been told this previously but my GP had refused to refer me saying I’d already had too many tests done, so my neurologist wrote him a letter and I had the scan which came back normal. If I was relying on seeing the NHS neurologist, I’d still be waiting now.
My neurologist concluded I have migraine which might have been triggered by menopause and that I should be trying HRT again. He said women with migraine shouldn’t just be denied HRT as a blanket rule and that we should be able to try different doses and different types of HRT. I’m part of a menopause Facebook group and lots of women with migraine say they’ve been denied it. I’m now on the low-dose HRT gel.
I’m also trying to get better treatment for my migraine – I’ve been told I’m eligible for the new calcitonin gene-related peptide (CGRP) treatments but I can’t access them where I live. I can’t take other preventive medications like beta-blockers as I react badly to them. I also spent £200 on acupuncture which did nothing. It turns out my local authority doesn’t even have a neurology department, a visiting neurologist travels to the area.
I’ve also been referred to mental health services multiple times as doctors keeping saying the issue is anxiety, but each time I’ve been told I clearly do not have a mental health condition, I have a physical illness.
What needs to change for people with migraine
I think people need to not dismiss how debilitating migraine is. I used to be a police officer and drive a lot. I completely took my freedom for granted. Now I’m worried I could have a debilitating migraine attack when I drive a few miles to the local shop. I think having migraine can close your world down so much and there’s very little peer support. However, there are so many people out there with migraine. For anyone looking for peer support, I really recommend the Facebook groups Menopause Warriors and Migraine with Aura Worldwide.
I also think it’s important that people know that migraine can develop later in life. Of course it’s important to get new migraine symptoms checked out, but based on my conversations with people in the same position, it’s actually a lot more common than you might think.